Category: Pain Management

,I am always exploring new ways to deal with the chronic pain I suffer because of Hpp. In the last few months I have had the chance to try Ketamine Infusions. Yes you read that right Ketamine. It is most commonly known for being a street drug called Special K. Ketamine is an anesthetic that can provide an out of body experience when not taken properly or under the supervision of a physician. This drug when administered via IV can be used as a sedative, for postoperative pain, and as a rapid-acting antidepressant. The medication is similar to Lidocaine in how long it remains in the system, being processed out in under a day.

Besides my Hpp I also suffer from fibromyaligia, depression, and few other super fun things….not. So lucky for me this treatment hits many of the treatment points and allows me to treat multiple disease states with a single punch. But I digress, allow me to share how it helped each one of my disease states.

I have had depression since I was in middle school, and has for the most part, been well managed with anti-depressants. There has always been the typical “low” periods that for me were unavoidable, but manageable. With the addition of a ketamine infusion, I felt more like real self than I have in many years. Not manic happy, but not dull, make it through the day either. More of a steady happy feeling allowing me to enjoy more of the small things I used to.

With fibromyaligia one of the biggest issues I struggle with is a never ending fatigue. Not your normal tired, or worked to hard, or didn’t get enough sleep kind. But the, there is literally no fuel in my muscles to make them move even if I want to, kind of fatigue. The kind that is not only difficult but down right annoying because my brain is still wide awake and ready to do things, I just can not make my body listen. Well that was all but washed away with the wonderful effects of the ketamine infusion. Just a few days post treatment I was able to return to a more normal, busier schedule. There was enough fuel in my muscles to get the house work done, take care of the dogs (yes I have four!), and work out. Then just to add a cherry to the top of the sundae, there was no hangover from overdoing it like I would have otherwise suffered. This is one of the biggest differences I noticed, and continued to notice for upwards of three weeks after treatment.

With my Hpp, a deep aching pain is one of the biggest struggles I deal with on a daily bases. The pain is never a level 10 so to speak because it is bearable, but when it never seems to dissipate , get better, or improve for longer than a few minutes, it can be like torture. Thankful relief from this particular symptom was almost immediate after an infusion. The muscle pain was gone, the deep aching bone pain, was gone, all that was left was the random pains from just being a clumsy shit sometimes.

The infusion itself was no big deal, and actually kind of refreshing for someone who sleeps maybe four decent hours on a good night. Because the medication itself is a sedative once they start administering it you just kind of fall asleep with out even realizing what is happening, and bef0re you know it you are waking up feeling like you slept seven to eight straight hours. I personally love this part because I kind of feel like I can “catch up” on some of the hours I missed, even if I am only out for about an hour. Following the infusion itself I had no major side effects, some tiredness for a day or so, but by two days later I feel like a whole new person. Because of how the drug acts on the spinal cord and nerve pathways and pain pathways, it also has the added benefit of allowing me to take even less pain medication than normal. The infusion is not itself a cure-all, and does not eliminate the need for other forms of pain management, but it does reduce the amount of time, money, effort, energy and such I have to put in to making myself feel like a normal person. Not to mention with luck the more I get the less often they will be needed as the effects can become more long term.

Never in my life have I been told I didn’t get the job after I had been basically guaranteed it. Never has my medical history or medications been an issue. I work in EMS, and I’m good at it. I love to help people and work with patients. I know how to make someone feel better when they are experiencing one of the scariest times of their lives. Never did I think that I would not be able to work in the field I was put on this earth to be a part of.

But sometimes life has a way of kicking you when you’re down, and turning you in a different direction. God knows it’s happened to me more then once. Every time I get kicked I somehow manage to pick myself up and start over. I don’t know how that this point because if I was humpty dumpty there would just be to many tiny pieces to try and put back together again. But there is also an ancient Chinese practice that says when something is broken you do not throw it away as though it no longer has value, you mend it with gold, and make it better. So I guess I can also be seen to be made of mostly gold from the number of times I have been mended.

Today after feeling like there was no way I could pick myself up again I had a few things happen that renewed my strength in the fight I have to live my life fully and help others to do the same.

The first thing was having a Lidocaine infusion this morning and even if the effects last only a few hours, I got the chance to remember what it feels like to live without pain. I was so happy I could have cried because I didn’t realize how much pain I had been carrying around with me for so long, and how heavy it had gotten. I smiled and it felt good, I stretched and nothing hurt, I napped and didn’t wake up with something in pain. So I am grateful for this day because it reminded me I still have some fight left in me.

The second thing that happened was I came across a young woman, deaf since the age of 18 from a connective tissue disorder, competing in a singing competition of all things. As I watched her video I could feel the hairs all over my body stand up. She sang beautifully on stage barefoot to feel the vibrations from the bass to keep time, and took ques from her interpreter down by the judges. This is someone who gave up on something she loved for many years and then somehow found the strength and determination to make it work and reclaim the love she had lost so long ago. I decided right then that this would be the video I would watch the next time I got kicked, the next time someone told me I couldn’t or wasn’t able to. Because this girl is living proof of living life without limits!

I am a victim of the opiate crisis. No I have not lost any friends or family to drugs, and no I am not, nor have I ever been an addict. But the war on opiates has more than one type of causality. I have spent the last year trying to get a job in my area (so within an hour drive) in the field that I have dedicated my life to, emergency medicine. I have gotten a bachelors in health sciences, taken many classes pertaining to medicine, obtained my AEMT certification, and worked for multiple fire departments as an EMS provider. But all of a sudden I find myself unable to become employed in the field I was put on this earth to be a part of because of the medications I have PRESCRIPTIONS for to help control the chronic pain I have from a rare disease. I do not want to go on disability yet, I am just not ready to admit that is what my life has come to. I am able to work, I want to work, but no one will hire me because I have prescriptions for and take on occasion opiate medications. I have worked for several years in this field prior to this year with no issues, an exemplary record for care provided and letters of recommendation from employers due to my ethics, ability to function under stress, and provide excellent care to any patient in all situations. However, now because of the war on opiates, pain medication and chronic pain have become an extremely taboo issue in the workplace.

The FDA uses a lot of different adjectives to describe everything from A to Z when it comes to opiates. What I find interesting are all the things that seem to be ignored such as:

This medicine may make you dizzy or drowsy. Do not drive or do anything that could be dangerous until you know how this medicine affects you. Sit or lie down if you feel dizzy. Stand up carefully.

So what employers and their legal teams seem to ignore is the part where it states these meds MAY have certain affects, as in they MAY also not affect you at all. Or how you should not perform certain activities UNTIL YOU KNOW how it will affect you, as in you are good to go if you already know how it will affect you. This is what applies to my case. I do not process most medications the way the average person does and as a result it means the combination of medications I take for various things is a bit odd. However I also know after years of being on these medications exactly how they will affect me, for how long, in what manner, and even how long they will affect me based on what I have eaten or drank recently. The websites basically give all the worst case scenario information which is what companies and legal teams grab onto.

I find it very hard to be told that I should find another field to work in, or to let it go and apply somewhere else and just don’t put down my medication list. I want to get a job in the field I love and I want to do it honestly. Why should I have to hide my medication list, or give up the thing I love the most after already doing it for years? I understand that rules and regulations are put in place for a reason to protect the patients. Personally I would never endanger a patient by taking something that affected me so severely it could cause them harm. But when advising physicians are making recommendations based on one aspect of the medication it can be very hard to for those few who have no issues to make it through. There is a “black box” warning on almost all medications state that they can impair you in some way, and for good reason. But again that is there because a few people reacted that way and now it must be put on all prescriptions regardless of the person taking them. I have met people who respond so poorly to caffeine they are unable to function on even the smallest doses present in things like chocolate. Just an example of how something benign can have a profound affect on someone the same way it can have none.

I will not give up, I work every day to find a way to do what I love. I am always looking into new research and new methods of pain control that do not involve medication or at the very least opiate medication. There are people out there every day showing that you can do what you love despite all the odds, you just have to believe and work hard enough.

The use of steroids such as predinisone is a slippery slope in the world of chronic illness. Many who have been on predinsone for any period of time typically report a significant reduction in symptoms, an increase in energy, and an overall improvement in daily life. However, when they are used continuously they can have some pretty negative long term effects on the body.

For someone in the HPP community some of these side effects can only add to the problems caused by the disease. Most pronounced and serious is the thinning of bones caused by long term corticosteroid use. This side effect, though not typically common in occasional and or part time use, can be very problematic in a disease already causing bone thinning or softening. But being able to utilize coritocsteroids in the right way and only when needed can bring about a very positive effect.

Though I can not speak for others in the community I know personally that I tend to experience occasional flares of tendonitis in random joints, with no provocation, and with no warning. When this happens I do my very best to get the issue under control with all the regular therapies. I utilize resting, icing, muscle rubs, NSAIDS, water and cryotherapy. If I am unable to resolve the issue myself within a few weeks, or make no progress in recovery there is one thing I usually turn to that I have found to work well, is easy to use, and non-harmful.

Methylprednisolone in a one week dose pack is my go to for issues like this. It is a derivative of the very popular prednisone but without the hassle of a bottle and tapering which usually has to happen. It comes prepackaged with a set number of pills to take each day starting with the first day being the highest dose, then tapering down to almost nothing. I can usually tell after the first two days of dosing that there is a significant decrease in pain and restriction of movement in whatever joint is most problematic. Even after the first day I notice a reduction in pain which typically comes as a huge relief since dealing with daily pain is only compounded when you have tendonitis to further restrict your movements.

I really like this type of medication because for me it not only works well on the area that is specifically bothering me, but tends to also help other areas of swelling, such as nerve inflammation or bad muscle spasms. This allows me to take a minimal amount of medication and fix the maximum amount of problems all in one setting. Plus it’s one less time I have to go for an injection. Beyond those other factors I am also able to communicate with doctor using the Aurora portal to request the dose packs avoiding the excess doctor visit and energy wasted on going in. Not all medical professionals may be comfortable prescribing this medication in this manner and may ask for you to come in for an appointment. This is also fine and still well worth the visit. I have also found that getting this prescription is much cheaper then going in and paying for an injection of cortisone in the afflicted joint, and honestly when you spend as much time, money, and energy on going to the doctor and taking care of yourself as I do, it’s worth the savings.

So if you any further questions please contact your local doctor or pain management specialist and ask about Methylprednisolone the next time you have a flare.

For more information on the side effect of Corticosteroid use please visit the following website:

As a person suffering from a chronic and rare disease I am always looking for the next thing that will help me deal with the daily pain and fatigue my illness causes me. Recently I had the opportunity to try a relatively new therapy known as a Lidocaine Infusion as a way of treating my pain.

To start let me tell you a little about what a Lidocaine Infusion is. An infusion is the administration of medication through an I.V line directly into your bloodstream. This route allows for medication to be administered quickly and systemically. In other words the medicine quickly goes to all areas of your body, versus something local like an injection which tends to keep the medication in the specific area it was administered. Lidocaine is a numbing agent that most people have heard of in the dental world or if you have ever had to have stitches or mole removal. It is the drug commonly injected at the site of a procedure to numb the area. Lidocaine comes in a lot of different forms in a lot of different strengths. So what may be used by a dentist or an ER doc is not necessarily going to be the same thing you find in over the counter lidocaine patches.

So when you put it all together you are essentially receiving a numbing medication systemically to control pain. Now there is a slight catch with this type of procedure. Lidocaine has a very short half life and what that means is that the average person will process all the medication in a very short period of time and no longer feel the effects. Why can this work then you may ask? Well when a person has been in pain for a long enough period of time it is possible for those nerves to essentially “learn” to be in pain. Just like how a computer sometimes freezes up so do your nerves, and like a computer they need to be reset. Lidocaine works on the nerve pathways to the brain and calms them down so they no longer transmit the painful feeling to your brain, or they transmit less of the feeling. Chronic pain sufferers can also continue to have pain after the reason for their pain has been removed. This is why Lidocaine Infusions can be a useful tool in pain management.

So on to what I personally have experienced with the infusion. Given that this works on your nervous system you are required while receiving the infusion to essentially meditate, clear your mind, and ignore all outside stimuli. This is how it is supposed to work best, put yourself in the calmest place possible so the medication can do as much work as possible. Once you begin receiving the infusion whichever hand or arm you receive it in will begin to feel cold and kind of numb. This is due in part to the lidocaine causing the numbing and saline solution it is administered in being colder than your internal body temperature. So bring a comfy pillow and blanket. I was told I may feel sick to my stomach during the infusion but to be honest I didn’t have an issue with this as I am used to the feeling and have worked on breathing exercises to suppress the icky pucky feeling. Basically after that I just rested till the medication was done being administered. At this time when I was starting to move around and get unhooked I did start to feel a bit lightheaded and heart started racing a bit. Again I just took my time and a few deep breaths to calm myself and after a few minutes was good to go. I could tell right away that my pain was better. The achy feeling that usually resides in my joints was gone and I was really excited. However I was told by the doctor that everyone feels that way right after and the real test would be seeing how I felt after a few days, by then which the medication would be completely out of my system. I went home and had the expected feelings of being tired, but not so severe as to ruin my whole day, and not the drugged tired I was anticipating. Needless to say I slept great that night. So generally if you are going to get any benefit from the medication you will know within a few days, then it’s just a matter of how long you will get that pain relief.

For me it lasted about two and half weeks and made the almost 36 hours of traveling I did to get to Bali easily bearable. Keep in mind that the last time I had traveled a month prior I was on a plane for only about three hours and suffered a major flare afterwords. I found that not only did I have less pain in general but when I did need to take extra medication I could take half or less of what I would normally have taken and get the same results. This was very exciting since I am all for anything that means I can take less pain medicine to function at the same level as others.

The time spent getting the approval, the overall cost, and the time spent getting and recovering from the infusion were well worth it for me. But remember that this type of infusion does not work everyone. Some people receive no benefit at all, but in my opinion it is something worth trying if it can lead to a better life. Try anything once they say.

For more information on Lidociane Infusions please visit the Therapies section of Articles on this website.

Whether you have HPP or not, any person suffering from a chronic illness, or chronic pain should, in my opinion, have at least one dog. When you feel like crap and like no one understands you can always count on your furry friend to be a comfort. My dogs know when I am in pain and when I have reached my limit almost better than I do. If I have been working hard during the day and am starting to feel tired by dogs know better than me that it’s time to quit. My big Labrador, despite being young, will go into a very calm state and spend much more time snuggled up right next to me quiet and warm. He leans on me providing that warm comforting pressure that makes me feel like it’s okay that I can not keep going even if the people around me are. I love my family, and when they tell me it’s okay if I have to stop, a part of me still feels guilty because they keep working while I lay down. It’s nothing they do and there is nothing that can be done to correct this as it’s all mental. But no matter the circumstances my dogs relieve me of my guilt and make me feel like its okay, they also assure me that resting is what I should be doing because of how they act. Studies have also shown how beneficial having an animal around can be for people who suffer from chronic pain and or anxiety along with a whole host of other issues. They provide a reason to get up in the morning and a reason to move around on my very worst days. They give me nonjudgmental companionship and love that is unmatched by that of any human. I’m not saying their love is better, only different. They love in a different way that fills a different void, and to me that is a huge comfort.

No one, including myself, tells me better when to stop than my dogs. A young dog does not lay down and relax for hours at a time out of nature. I am convinced mine does it because he knows I need him to be doing that.

If you suffer from a chronic illness please look into obtaining and training a service dog so you can take the comfort and support you need anywhere with you. A good place to start is taking your pup to local areas and familiarizing them with sounds, smells, people and such. Then take them for their Canine Good Citizen certificate.

Edgar my fur baby

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